Symptoms and Updates

Several people have asked if Kayla had any symptoms of Celiac Disease, or what led to her being tested for it, and also how things are going with the diet now.

So, I figured it was time for a little update.

Symptoms for CD can be mild to severe and some people with the disease don't even have symptoms, also called "silent celiac disease."

Some of the symptoms are failure to thrive, malnourishment, lack of growth of weight and sometimes height, diarrhea, constipation, vomiting, foul-smelling stools (uummm, aren't they all foul-smelling?!), instead of loose, stools may be big and bulky (sorry for TMI, but that could be one symptom Kayla had).

Kayla was never dx as "failure to thrive" or "malnourished" but she was very slow to gain weight in the early months; she used to go in for weekly, and then monthly, weight checks. The NP wasn't too concerned (even though one month she didn't gain any weight at all) because she seemed healthy and active enough. Even though she was slow to gain weight she pretty much stayed on her own growth curve.

So I don't know if those early months were indicative of CD or not; can a person even start showing symptoms that early? The only gluten she would have ingested would be whatever passed through my breast milk and I don't know enough about gluten to know if it breaks down and passes through the breast milk and would affect a baby that much or not.

Her only other potential symptom would have been possible constipation. I was never sure if she actually was constipated or not; I just know she would struggle a lot to go to the bathroom - and this was even as an infant when stools were loose. I couldn't understand why she would be so scrunched up in pain and crying out when she would go; I would be in tears watching her struggle and scream. I thought she had so much trouble because of low muscle tone.

At some point I remember reading a Down syndrome health guideline where it was suggested individuals be screened for CD as a preventative measure. According to these guidelines the screen should be done between 2-3 yrs of age; it doesn't mention having it repeated at later years, but for some reason I thought it was supposed to be done yearly.

Kayla initially had this done around 2 or 3 years and that screen was negative. (I've since been told the screening she had done was a less sensitive test and one that isn't used any more because it's not reliable.) I guess it's good thing I was under the impression this test should be done annually or else we would have continued to believe the first test results of negative for CD.

Here is an article on Down Syndrome and Celiac Disease that gives a lot of good information. CD is a genetic disease, so it's recommended first-degree relatives be tested as well - guess I'm next to be tested! Since it's genetic there still isn't a correlation to why individuals with Ds have a slightly higher rate of having CD.

So, now that she's been on this GF diet for a couple of weeks have I noticed any changes? Not really. But considering she didn't have many symptoms to begin with I guess there wouldn't be much to notice (and her stools haven't changed yet either).

How is Kayla doing with the diet? She doesn't really know/understand right now that she's even on a GF-diet. I'm sure she wonders why I tell her she can't have those Goldfish crackers anymore, when she used to eat them, but she hasn't questioned it or thrown any fits over a food she can't have. I just say something like "those are for Lucas, those are his snacks...these are Kayla's snacks" and she seems to accept that.

The biggest adjustment for me (aside from reading food labels) has been eating out (seems like just about everything on a kid's menu is breaded), and getting in the habit of carrying snacks for her - especially if we're going somewhere that snacks are going to be served.

When we went to the DS playgroup a couple weeks ago I grabbed a rice cake for her figuring the kids would have a little snack. Well the host had a whole lunch prepared; thankfully she had raisins, yogurt, fruit, and string cheese. The only thing Kayla asked for that I had to say no to was the Goldfish crackers.

Then I took her to the MOMS Club Easter Egg Hunt during spring break. Afterwards we went in for our short meeting and there were snacks for the kids; I completely forgot to bring anything for Kayla. The snack, again, was Goldfish crackers. When she asked for some I just had to say "no Kayla you can't have any of those." Thankfully the mom bringing snacks that month also brought yogurt so she could have that.

Eating out is proving to be quite the challenge, but I'm trying to figure that out too. The next HOOT-n-HOWL dinner is at a local pizza place. What would be the point of bringing Kayla to that when she can't eat the pizza? I've found that Burger King and Chick-fil-A use dedicated fryers so they are only frying fries in them and those would be safe for her. If they aren't dedicated fryers then they are also frying food like nuggets and onion rings in them; and those are breaded so the breading contaminates the oil the fries are in. All of these little things I wouldn't usually think about.

So, there is our long-winded update!